Mental health care has made tremendous advances with a strong and growing evidence base for a range of psychotherapies, pharmacotherapies, new and promising neuroscience based interventions, and better ways to organise and deliver care. The role of social influences on mental health , including adversity and stigma as drivers of poor health and inequalities, is now better recognised. Psychological distress and personality difficulties are addressed actively with less stigma and more evidenced approaches including CBT, mindfulness, mentalisation, and transference based approaches. What has led to this? We argue, perhaps provocatively, that listening to patient experiences and narratives are at the heart of every therapeutic revolution and innovation. Our theory driven models of mind and therapeutics are often challenged by patient and public experiences that do not conform to our expectations, reflecting a lack of complexity and nuance in our models. Trauma informed care, for example, is likely to transform the way we understand recovery in psychosis and personality difficulties. Patient engagement is integral for sustainable recovery, therefore a better understanding of the reasons people do not engage is important. This information can only be gathered if people feel safe to speak freely and can trust those they seek care from. The most marginalised and excluded are less likely to trust in authorities, and less likely to be recruited to research, and more likely to encounter coercive care. Therefore methods to apprehend authentic experiences are crucial to improving health care and public mental health.
As part of research in cultural psychiatry and health inequalities, patient and public experiences, narratives and stories, are central to developing research questions, understanding which to pursue and how to do this. We assume knowledge is socially distributed. Qualitative methods enable a more experience-driven holistic approach and include in-depth biographical interviews, focus groups, ethnography, or individual interviews (structured and unstructured) around a particular topic. The richness of data that these methods achieve facilitates evidence-based discoveries and new knowledge, even from highly stigmatised groups and on contested topics. For example, exploring the reasons why patients do engage with specific therapies or services, and what touch points impact upon their decisions can help to build more effective care. Equally, we must discover why patients feel badly treated, say some of what we do as hostile or unhelpful, and so manage without our offer of therapeutic options. Indeed, we must be careful to not compound marginalisation with inflexibility of approach. For example, recognition of diverse illness perceptions can reveal understanding surrounding perceived causes of illness and expectations of treatment that do not match those of the clinician or commissioner. We also developed a model of ethnography as a clinical intervention for the NHS; this was ‘cultural consultation’ and originally developed at McGill in the 1950s, and then evolved to improve the quality of care for first nations, migrants, religious minorities, and racial and ethnic minorities around the world.
Qualitative methodology can be informative and powerful, especially if the findings are acted upon and the research itself involves changing the system in which it takes place; for example, participatory research and experience based co-design lead to the co-production of novel interventions and approaches that are more acceptable to both those delivering health care and those in receipt of it, thus reducing the translational gap. The notion of diagnosis as a science is contested in by many disciplines and by those exposed to more coercive care including detention under the MHA. Qualitative methods allow us to explore these issues in depth, whilst doing so we empower and enable people to become involved in research in a meaningful way, where they feel that they are understood, and are able to tell their real story. We also use mixed methods, whereby qualitative research is used to deepen a finding in quantitative work, or investigate a totally different mechanism, or explore experiences about a new intervention; for example, in acceptability and feasibility work. Alternatively, triangulation between methods can raise confidence in the findings. It is through such listening that we’ve learnt psychological therapies can have adverse effects, that withdrawal symptoms following antidepressant prescription are possible, and that dissent and disruption to conventional theories and models of mind offer new avenues.
We have also used arts based methods to help those having difficulty verbalising their views. Most recently we used photovoice in a quality improvement project amongst African Caribbean people living with psychoses. They found taking pictures and narrating their
lives was empowering, raised confidence, improved trust and they developed new skills. We are now undertaking a project on the mental health act using photovoice as the basis of experience based co-design and welcome partners. A further development is the adoption of peer researchers as way of improving the quality and depth of the information we gather. This approach also facilitates the representation of different socially excluded groups in research studies which conventionally exclude the most marginalised, minoritised, and racialised groups. Peer researchers offer unexpected insights and interpretations of research findings. This approach reduces the power imbalance between the research participant/subject and the researcher. However, to support peer researchers we need better ways of involving them, supporting and training them, and paying for their time on par with professional researchers. We hope to pioneer new ways of working and promoting peer research and experience based research to better understand emic, indigenous, perspectives. We welcome partners on this journey.